WORKSHOP REPORT


SOUTH-ASIA WORKSHOP
         ON
TECHNICAL ASSISTANCE
        AND
   MONITORING AND
     EVALUATION
     ...
Summary
This workshop included participants from 4 countries: Nepal, Bangladesh,
Pakistan and India. The Collaborative Fun...
CONTENTS

                          Contents
                                                          Page Number
Introdu...
Introduction
Aim
The workshop aims to provide technical assistance to the grantees of the
collaborative fund and educate t...
Outline of the workshop
The workshop included sessions on
   o ARV & Co-infection Update
   o Human Rights & Stigma and Di...
OPENING SESSION
The opening of the workshop began with Mr. Loon’s welcome address. All the
participants including Mr. Davi...
Session – 2 INTRODUCTIONS TO
           COLLABORATIVE FUND AND TIDES
Mr. David Barr, Global Manager – Collaborative fund f...
Session – 3 COUNTRY REPORTS ON ACCESS TO
                TREATMENT
Mr. Greg Manning from Australian International Health I...
   IS ARV AVAILABLE? HOW ARE THEY DISTRIBUTED? WHAT DRUGS
       ARE AVAILABLE OR UNAVAILABLE

Nepal: Around 10 – 12% of ...
Session – 4 PROJECT PRESENTATIONS FROM
                  GRANTEES
Mr. Andy Quan chaired and invited the representatives fr...
Community activists and Civil Society Organizations and media, meeting with
pharmaceutical companies, meetings with Media ...
fat pads, breast enlargement, lipoatrophy in face, arms, legs and buttocks and
prominent leg veins. He also insisted on th...
about the lack of awareness about treatment literacy in spite of its importance.
They are ignorant not only about the avai...
Session – 7 DEVELOPING STRATEGIC
            TREATMENT ADVOCACY PLAN
Ms. Leena of MSF opened the session by giving the def...
Mr. Asher presented the group work
He stated that in order to bring the expected changes the first step to accomplish
woul...
-   Information gathering related to the issue
-   Dissemination of these information at different levels / stake holders ...
The participants were also informed about the history of the beginning of the
legal response to the pandemic. He stated th...
on the grounds of HIV status and proper counseling should be offered to enable
pregnant women to make an appropriate decis...
community had to face problem not only from the family but also from the society
after the demise of the life partner. She...
Session – 10                MONITORING AND EVALUATION
Dr. Sudhakar, MBBS, MHA took the session on Monitoring and Evaluatio...
ACTIVITY 1:
The participants were asked to sit in groups (by country) and develop the
indicators for their respective proj...
ACTIVITY 4: Advocacy Activities
Indicators:
    No of people reached through the advocacy activities by the type of
     ...
Indicators:
    Number of AIDS CARE magazines published in one year
    Number of AIDS CARE copies published and distrib...
ACTIVITY 6: No of PLHA who receive treatment literacy training
Indicators:
    240 persons reached through 8 workshops fo...
Appendix 1: LIST OF PARTICIPANTS

   PARTICIPANT NAME            ORGANIZATION       COUNTRY

1. Md. Shahid Al Mamun       ...
26. Mr. Pervaiz Masih              Cathe Foundation         Pakistan
  27. Mr. Ahmed Habib                PLUS DF         ...
Appendix 2: WORKSHOP AGENDA
 DAY 1 - 26th April 2006

Time             Sessions                                   Presente...
project presentations? What actions are    Report-back.
                 you inspired to do? (note: the previous
         ...
10.15-10.30      Tea/ Coffee Break
10.30-13.00      Small group sessions:                Leena, MSF
                    • ...
10.15-10:30      Tea/Coffee Break
10.30-12.00      Exercise:                                    Dr. Sudhakar, MBBS,MHA
   ...
31
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  1. 1. WORKSHOP REPORT SOUTH-ASIA WORKSHOP ON TECHNICAL ASSISTANCE AND MONITORING AND EVALUATION 26 – 28 APRIL 2006 Hotel Vijay Park, Chennai The Collaborative Fund for HIV Treatment Preparedness 1
  2. 2. Summary This workshop included participants from 4 countries: Nepal, Bangladesh, Pakistan and India. The Collaborative Fund for HIV Treatment Preparedness, South Asia organized the workshop. As the local host, the Indian Network of People living with HIV/AIDS (INP+) organized logistics and administration. During the three day workshop, the current scenario of Access to Treatment in each country was not only explored, but also the participants were educated on various issues related to treatments access, for example an update on ARVs and HIV Co-Infection. The workshop was designed to cover all-important needs of the grantees including treatment literacy, monitoring and evaluation, and human rights, stigma and discrimination as related to treatments access. The workshop was participatory in nature, with the participants mainly working in country groups to explore the issues. Plenary feedback sessions allowed time for further discussions of points raised and sharing of ideas amongst country representatives. Ultimately, the country participants each worked to review their existing project activities and to set plans for its improvement. They also developed indicators needed to ensure that their project activities would be fully implemented. Evaluation of the workshop by participants was positive, and the progress in the grantees’ respective projects over the next few months will indicate the impact of this workshop. This report was written by Anjana Lakshmi P, Secretariat Support Officer, INP+. Mr. Sudha Prabhu and Mr. Alagarsamy of INP+ provided administrative and technical support for organizing the workshop All enquiries about the Collaborative Fund in South Asia should go to the Regional Coordinator, South Asia, Mr. Loon Gangte at loon_gangte@yahoo.com 2
  3. 3. CONTENTS Contents Page Number Introduction 4 Session 1: Expectations 6 Session 2: Introduction to Collaborative Fund and TIDES 7 Session 3: Country reports on Access to Treatment 8 Session 4: Project presentation from Grantees 10 Session 5: ARV. OI & Co-infection Update 11 Session 6: Treatment Literacy – Panel Discussion 12 Session 7: Developing Strategic Treatment Advocacy Plan 14 Session 8: Human Rights & Stigma and discrimination 16 Session 9: Marginalized Groups and Treatments Access – Panel Discussion 18 Session 10: Monitoring and Evaluation 20 Session 11: Review and evaluation of the workshop 24 Appendix 1: List of Participants 25 Appendix 2: Workshop Agenda 27 Appendix 3: Summary of Participant evaluations 30 3
  4. 4. Introduction Aim The workshop aims to provide technical assistance to the grantees of the collaborative fund and educate them on Monitoring and Evaluation. Learning Outcomes The workshop focused on developing the capacity of grantees and the RAC in areas identified by them in the Pre-workshop TA survey. At the end of this workshop, participants should be able to:  Update themselves in treatment advocacy and literacy in order to create more demand within the region for AIDS treatments.  Identify barriers in treatment access in the region and find ways to bridge the gaps Background to this workshop Millions of people around the world need HIV treatment now and millions more will need it in the future. Successful advocacy efforts, led by people living with HIV/AIDS, have resulted in new political and funding commitments by multilateral, bilateral and national government agencies, fortifying the hope that HIV treatment will be accessible in al parts of the world. The effectiveness of HIV treatment access efforts will depend on the ability of people living with HIV to overcome the stigma associated with HIV disease, access to medicines, and health care services in their communities and understand how to make and follow through on treatment decisions. The collaborative fund is developed in partnership with the membership of the International Treatment Preparedness Coalition (ITPC) and Tides Foundation and has leading Treatment advocates and educators from around the world. It is a community – driven funding mechanism to support HIV treatment advocacy and education efforts in eight funding regions: Southern Africa, West Africa, East Africa, Southeast Asia, South Asia, Caribbean, Lain America, and Eastern Europe/Central Asia. In each funding region, the collaborative fund provides  Grants for community based organizations for HIV treatment advocacy and education projects  Support for regional networks to share information, implement collaborative strategies, and provide technical assistance to grantees As a part of the funding program the workshop on “Technical Assistance and M & E” had been arranged for the South Asia region grantees. 4
  5. 5. Outline of the workshop The workshop included sessions on o ARV & Co-infection Update o Human Rights & Stigma and Discrimination o Monitoring and Evaluation The participants who attended the workshop will be equipped with the skills necessary to develop, share the knowledge on treatment literacy, advocacy skills and implement the project activities in a more perfection manner. Panel Discussion & Activities The panel discussion and the activities carried out during the workshop encouraged the participants to update themselves with the scenario of treatment access in other countries. Participants The countries of Nepal, Bangladesh, Pakistan and India were invited to participate in this workshop. In each country, the grantees were requested to nominate one person from their organization. All Regional Advisory Committee (RAC) members of South Asia attended the meeting. If a RAC member was involved with a grantee project, then another representative of the organisation was also invited to the meeting. Representatives from Tides Foundation, administrative support from INP+, the regional coordinator for South Asia, and technical advisors also attended. A full list of participants is included in appendix one. Unfortunately, two participants from Pakistan were unable to attend due to visa problem. Organization The Collaborative Fund for HIV Treatment Preparedness, South Asia organized the workshop. Indian Network for People living with HIV/AIDS (INP+) was the local host. 5
  6. 6. OPENING SESSION The opening of the workshop began with Mr. Loon’s welcome address. All the participants including Mr. David Barr, Global Manager – Collaborative Fund for HIV Treatment Preparedness and Mr. Andy Quan, Project Manager - Asia attended the opening session. In the opening, Mr. Loon explained the workshop to participants. It was followed by the review of the agenda where Mr. Loon informed the participants about the minor changes that had been made to the agenda shared with them. He also updated them with logistics, housekeeping arrangements for the workshop venue and travel reimbursement procedures. Session – 1 EXPECTATIONS Mr. Andy Quan, Technical Advisor – Asia made this session an activity based one that turned out livelier as the participants were asked to list their expectations on three different topics – What to learn, What to do and What to take home from this workshop. The participants were given about five minutes to jot down their points and at the end of the session he informed them that the common interest of theirs will be accomplished in the workshop as the agenda had been designed accordingly. Listed below are the common points of expectations from the participants. Participants Expectations  Learn more about treatment literacy in other countries  Know about the status of access to treatment in other countries  Know more about ARV, OI & co-infection  Know what is advocacy  To learn about Monitoring and Evaluation 6
  7. 7. Session – 2 INTRODUCTIONS TO COLLABORATIVE FUND AND TIDES Mr. David Barr, Global Manager – Collaborative fund for HIV Treatment Preparedness informed the participants about the Collaborative Fund, TIDES Foundation, and the International Treatment Preparedness Coalition through a PowerPoint presentation. His presentation provided a clear vision that Collaborative Fund is a partnership of Tides Foundation and the International Treatment Preparedness Coalition and a community driven funding mechanism that provides small grants to community organizations for treatment education, mobilization and advocacy project with technical assistance for the support grantees. The participants came to know about the 10 funding regions of Collaborative fund and the mechanism in which it works. They were also able to know about the breakup of the fund amount through the following demonstration TOTAL SPENDING - Breakdown by Activity Community Networks 7% Community Networks Direct Admin 13% Reg. Coordination CRP Coordination 11% Grants Indirect Admin 9% M&E Other Workshops 8% Technical Assistance Technical Workshops Assistance 6% Indirect Admin Other 0% Grants 43% Direct Admin M&E 3% The members were also informed about the grant application process, grant analysis, Process of Technical Assistance and network support given to each funding region, and the Process of Monitoring and Evaluation. The role of the Tides Foundation in the Collaborative Fund was explained to the participants by listing out the activities done by them that includes – administering grants, ensuring accountability and transparency of process, assists in developing policies of equity, diversity and openness, raising funds, assist community review panels in their work and reporting to donors. Mr. David concluded the session by sharing the plans of Collaborative Fund for 2006. 7
  8. 8. Session – 3 COUNTRY REPORTS ON ACCESS TO TREATMENT Mr. Greg Manning from Australian International Health Institute chaired the session. He formally invited and introduced the panel members to the participants. The panel included Mr. Rajiv Kafle from Nepal, Mr. Ratan Singh from India, Mr. Nazir Masih from Pakistan and Mr. Shale Ahmed from Bangladesh. The panel members were asked to present their country reports on Access to Treatment covering the details of number of PLHAs in their country, estimated number to be in need of ARV, estimated number who has access to ARV treatment, availability of ARV and the methods followed in its distribution, and also the details about the available drugs. Listed below are the details shared by the panel members for the above stated questions.  NUMBER OF PLHAs IN THE COUNTRY Nepal: The government report states that 60,000 people in Nepal are positive where as the actual estimation are around 120000 to 180000. Bangladesh: As per the Ministry of Health of Bangladesh, the total reported case is 658 and total estimated case is 7600. As a contrast the source from WHO & UNAIDS states the total estimated case could be around 13000 – 21000. India: The total estimated number of PLHAs is 5.206 million till 2005. Pakistan: The total number of PLHAs is 2829 that includes 2512 as HIV infection and 317 as AIDS patients.  ESTIMATED NUMBER OF PLHAs TO BE IN NEED OF ARV Nepal: Bangladesh: As per Government estimation, there are 67 members who are in need of ARV India: The number of PLHAs who are eligible to put on ART in India as on 31st May 2005 is 500000 Pakistan: No registered ARV till November 2005  ESTIMATED NUMBER WHO HAVE ACCESS TO ARV TREATMENT Nepal: There are totally 500 people on ARV out of which 400 people are enrolled at the Govt. ARV Roll out Centres Bangladesh: 38 individuals through Ashar Alo and 15 individuals through Mukto Akash are being provided ARV India: A total of 26231 are under NACO supported ART centre and 766 are under State supported ART centre Pakistan: A total of 109 members are under ART 8
  9. 9.  IS ARV AVAILABLE? HOW ARE THEY DISTRIBUTED? WHAT DRUGS ARE AVAILABLE OR UNAVAILABLE Nepal: Around 10 – 12% of the members are taking the 2nd line regimen drugs. There are seven ARV Roll out Centres out of which the main one is at Katmandu. The readily available drugs are from CIPLA which costs 1000 INR for 1st line Regimen and the Effavirenz tablet costs Rs.4500/- Bangladesh: Currently 3 medicines are available. In which, the available two drugs combination medicines are Lamivudine, Zidovudine and the three drugs combination medicines are Lamivudine, Zidovudine & Nevirapine. The single available drug is Effavirenz India: ARV medicines are being provided through 25 centres through out the nation. The available first line regimens are Zidovudine, Stavudine, Lamivudine, Nevirapine and Effavirenz. The second line regimen and the pediatric doses are not available. Pakistan: The General Medicines for OIs are available at PIMS Islamabad. Also 50 persons are getting ARV in a year through Shaukat Khanum sponsored by CRS. After the presentation of the panel on the country report on Access to Treatment, Mr. Greg thanked panel members. He concluded the session by presenting his observations on the panel discussion that are listed below  Number of PLHAs on ART is low  Huge difference between government and WHO estimates. Is this a useful advocacy issue?  Quality of rollout is problematic.  Disruption in the adherence of ART  Non availability of 2nd line regimens and pediatric doses  Sources of drugs is of interest to the group  Hep C and IDU use is an issue/HCV  Costs of tests and drugs are high: needs advocacy 9
  10. 10. Session – 4 PROJECT PRESENTATIONS FROM GRANTEES Mr. Andy Quan chaired and invited the representatives from each country to the dais. LEPRA and Kripa Foundation from India, NAP+N from Nepal, NCCR/CRY from Pakistan and AAS from Bangladesh made the project presentations. LEPRA: Dr. Sai Krishna representing Cheyutha presented the project activities. The hallmark of their project is the involvement and leadership of PLWHA. It has promoted the leadership quality of positive persons in fighting the epidemic and provides them with psychosocial and clinical services. The project has developed a group of volunteers to impart treatment education and literacy among PLWHA, referred to as positive speakers. The presentation also included the vital task accomplished based on the lessons learned – Networking at the service providing centres, self disclosure as a strategy in rapport development, active follow-up at the service delivery, departmental coordination of PLHAs health care centres, PLHAs involvement in child management during medication days, regular follow-up through Cheyutha clinic and nutritional support for sustained health. KRIPA FOUNDATION: Mr. Shreenivas made the project presentation that gave a picture on the implementation of the project activities, that included the site selection for the project, the reason for selecting the site, organization of in- house training, Primary care givers and Peer Educators training, which resulted in collaboration with the pharmaceutical companies. In conclusion, he presented observations and suggestions from the project: that the role of PCGs / PVs should be structured, necessity for medical camps, need for monetary reimbursement, affirmations to the PVs work, and enhanced training programmes for PCGs. NAP+N: Mr. Anjan stated that the objective of their organization is Treatment Advocacy. Many IEC materials related to ARV have been prepared educating people on the importance of taking ARV on time in their local language – Nepali. Other materials like leaflets and posters on 1st and 2nd line regimens have also been prepared. The presentation also included the details about the treatment advocacy program organized for People living with HIV/AIDS and stated that the outcome of the program indicated a lack of knowledge among PLHAs about ARV/ Treatment/ Side effects and their management. NCCR/ CRY: Mr. Qaisar Ismail made the presentation of their project. It began with the current problems faced in their country by PLHAs and the activities that have been carried out in addressing these problems including advocacy with Provincial Government, awareness raising seminars for policy makers, awareness raising programs for leadership of Health care workers, seminars for 10
  11. 11. Community activists and Civil Society Organizations and media, meeting with pharmaceutical companies, meetings with Media persons and developing & printing IEC material. He concluded his presentation with lesson learned – lobbying and developing personal contacts with decision makers will bring change, advocacy and lobbying have become a regular processes, the need of designing activities to make the situation better, and changing the attitude of journalists and media representatives who look out for hot news and fail to show any interest on issues of people living with HIV/AIDS. AAS: Ms. Habiba Akter made the project presentation explaining activities that were implemented including a seminar on Advocacy, Treatment, and Care for support for PLHAs. The presentation also included the components of Treatment access for PLHAs in Bangladesh, and their project’s contribution to better treatment access to PLHA. She also presented the achievements during the project period, which included the realization of the necessity of treatment for PLHAs among the health service providers, elites and stakeholders, and motivation given to health service providers to provide treatment without showing discrimination towards PLHAs. The challenges and obstacles faced in the process of implementation of the project activities were also presented which included sensitization of health service providers; expanding areas of program coverage, inadequate manpower to implement the project activities, and unaffordable medicines for the PLHAs. Session – 5 ARV, OI & CO-INFECTION UPDATE Dr. Tokugha Yepthomi, clinician and researcher of YRG CARE, Chennai made a presentation on the update on Highly Active Antiretroviral Therapy (HAART) in HIV management. His presentation included the HIV scenario in India stating 5.137 million infections, with a continuous growth in the number of AIDS cases, in which more than 85% infections are in the age group of 15-49 years out of which 75% are men. His presentation also highlighted the fact that the management of HIV disease can be done through management and prevention of opportunistic infections, and psychosocial support along with antiretroviral therapy. The presentation covered basic information about the life cycle of the human immunodeficiency virus. Dr. Toku also explained to the participants about the currently available generic antiretroviral drugs in India. The participants were educated about ART, when to start it, and the baseline investigations that needs to be done prior taking ART. They were also informed about the side effects of ART. Dr. Toku informed the participants about the HAART associated physical changes that include increased abdominal growth, enlargement of dorsocervical 11
  12. 12. fat pads, breast enlargement, lipoatrophy in face, arms, legs and buttocks and prominent leg veins. He also insisted on the fact that the success of HAART depends only when the therapy is started with the patient’s consent, where the patient should be explained about the importance of adherence before starting & at every visit thereafter and when the viral load is suppressed. The benefits of HAART including suppression of HIV, prevention of immune system damage, and increase in survival times. If sustainable, HIV becomes a manageable disease and decreases Opportunistic Infections (OI). These issues were also explained to the participants. He concluded the session presenting the goal of the therapy as maximum and durable suppression of viral load, restoration and/or preservation of immunologic function, improvement of quality of life, and reduction of HIV-related morbidity and mortality. Session – 6 TREATMENT LITERACY Mr. Rajiv Kafle of Nepal chaired the session and invited the panel members to the dais. The panel members were Ms. Shukria Gul from Pakistan, Mr. Anisuzzaman from Bangladesh, Mr. Mike Tonsing from India and Mr. Anjan Amatya from Nepal. Mr. Rajiv opened the panel discussion presenting to the participants on treatment advocacy and literacy efforts taken by his organization. He stated that Treatment Literacy is an essential element for Treatment advocacy and expressed his grievance about the lack of awareness among community members about the importance of treatment literacy. He insisted that an individual affected should know about the medicines that are prescribed – at least about their basics. He proudly shared that the Nepal team focuses on Treatment Literacy and had developed Posters about ARV and treatment adherence adopting the contents from the website and reproduced in their vernacular language. He also informed the participants about the four books that they had published highlighting the importance of Treatment literacy and on treatment training for advocates. The panel members were asked to present about treatment literacy by framing answers to a set of questions like definition of treatment literacy, its importance, the need for treatment literacy materials, what could make good treatment literacy materials, needs in each country and how treatment literacy materials can be produced and distributed. Pakistan: Ms. Shukria Gul presented the scenario of treatment literacy in their country. According to them, treatment literacy is giving complete information regarding HIV Treatment, when and why to start and also about HIV. She stated 12
  13. 13. about the lack of awareness about treatment literacy in spite of its importance. They are ignorant not only about the available treatment but also about the NGOs that provide such services. Moreover, the available treatment literacy materials are not in their local languages. The pathetic information shared was even the doctors’ do not show any interest in sharing the information to the community members. The available sources of treatment literacy are purely individual efforts where the materials are taken from other sources. She concluded her presentation, by highlighting the requirement of treatment literacy materials in their local language is the ardent need of the community there. Bangladesh: Mr. Anisuzzaman represented their country and presented the country scenario of treatment literacy. According to their team, treatment literacy should be a worthy IEC material that gives information about ARV, why and when it is needed along with its side effects. He stated that there is an immediate need for treatment literacy materials as the Government activities emphasize Prevention. He stated that these materials should be able to provide knowledge about ARV, OI and its side effects and could be produced in any form like audio visual, brochures and posters. Delhi: Mr. Mike Tonsing stated that treatment literacy should be a user-friendly IEC material highlighting the importance of Treatment and its benefits. Many of the community members do not speak about ARV, as they could not afford it. Moreover, the lack of education prevents the members in browsing or getting access through websites. The prime concern is that treatment literacy materials are not readily available in the local languages. Also the doctors do not feel the importance of sharing the treatment information to PLHAs. He concluded his talk by sharing their future plan to produce Treatment literacy in the local language for the next quarter. Nepal: Mr. Anjan Amatya stated that Treatment Literacy is IEC materials with proper information about the subject, which could be in any form like booklet, posters etc. It is important as it will be useful for layman to update their knowledge. According to their team, any form of materials that provides details on OI, ARV, side effects are good treatment literacy materials. He concluded stating that the literacy materials should be simple reaching the grass root level. Mr. Rajiv concluded the panel discussion sharing observations based on the inputs given by the panel members. He stated that treatment literacy is the ability to act upon the existing barriers and through this community members should also know how to demand things for their welfare. Adding to which, Mr. Greg stated that part of treatment literacy should also involve treatment of TB as well. Mr. David stated that the role of IEC materials plays a vital role, like counseling or workshops do, in imparting knowledge about treatment. 13
  14. 14. Session – 7 DEVELOPING STRATEGIC TREATMENT ADVOCACY PLAN Ms. Leena of MSF opened the session by giving the definition of Advocacy as “A campaign that an individual or organization undertakes to increase awareness for a particular issue, engaging in efforts to change attitudes and behaviour and a tool to disseminate information intended to influence public policy and law”. She made a clear statement that identifying advocacy issues in treatment should not stop with finding access to affordable drugs rather it should include Access to basic health care, public healthcare infrastructure, discriminatory behavior on the part of health care personnel, concerns about confidentiality, gender barriers, and understanding the legal basis of the right to health in the country. The entire session of Ms. Leena revolved around the key points that are as follows.  Apparent vision about what the actual need is and what we have to advocate for  Obvious about the target group and our expectations from them (backup documentation of cases happened)  How to achieve it – through people contact, constant touch with the ministries, updating them by writing them about the issues related to the subject and the important decisions taken  Documentation of the cases will be one of the effective tools  Focusing on One important issue at one platform should be the prime practice She also explained to the participants about the backup details that should be kept ready for any advocacy efforts that are being undertaken which include:  Details about cases of discrimination  Cases where PLHAs need information/ assistance to access treatment  Proposed Government policies & legal amendments that should be understood and critiqued vis-à-vis impact (need to get updated on all the new policies that come up related to the issues). ACTIVITY 1: In the activity, the members were asked to divide themselves into two groups to work on two different case studies. CASE – 1: PAKISTAN AND NEPAL An HIV/AIDS bill was drafted by the community and was sent to Parliament where there are a few fundamentalist parliamentarians who decide to amend the law. The community has to decide how to stop the amendment. 14
  15. 15. Mr. Asher presented the group work He stated that in order to bring the expected changes the first step to accomplish would be to form a coalition and consensus among the PLHAs, followed by forming another coalition of different stakeholders and also to identify like minded allies in Parliament, human rights organizations, and the Media. After forming the required manpower, the following strategies can be followed to implement the plan - Letter campaign – PM/ Speaker - Advocacy meeting, briefing - Press Conference/ Press release - Protest/ Agitation/ Strike - Phone / Fax campaign - Live story/ media Reporting SUGGESTIONS FROM MS. LEENA: Before forming any coalition a supportive background document needs to be kept ready. Many briefings need to be made before getting the support from a few parliamentarians. She suggested that the Health movement needs to be one of the strategies chosen and there should always be a constant involvement of health movement in all the advocacy activities. Mr. Andy suggested the community needs to choose the right person in the parliament to carry out the message on behalf of the community. CASE -2: GSK has applied for a patent and the community has to find a solution to stop this patent. (India and Bangladesh) Dr. Sai Krishna presented the group work They have presented a broader plan of strategies to follow so as to achieve the goal The following are the strategies suggested - Consultants for understanding patent law - Dissemination of this information to different levels of stakeholders - Formation of pressure group comprising doctors, PLWHA, Economists, Media, law-personnel, people’s representatives and the pharmaceutical companies - Influencing Policy Makers One to one interaction Group interaction Institutional approach SOCIAL ACTIVITIES - Demonstration & representation in legal institutions OTHER ACTIVITIES: - Identification of key persons or organizations among the community 15
  16. 16. - Information gathering related to the issue - Dissemination of these information at different levels / stake holders who could support for the community, present to the judiciary etc - Drafting the Action-plan - whom to contact, what to share and how to implement - Implementation SUGGESTION FROM MS. LEENA: The communication should be given more importance. At the same time, the methodology of using a multilateral approach also needs to be given equal importance. Mr. Ratan suggested while looking into the strategy plan, the required funds to implement the above-mentioned strategy needs to be given equal importance. Ms. Leena concluded the session by highlighting important tasks that need to be done as groundwork for any kind of advocacy activities. - Calling - Communication to all stake holders - Organizing meeting - Xeroxing - Writing Background documents - Printing Banner - Arrange the travel - Police permission - Legal Aid lawyers - Media calls – the groundwork done to prepare media to correctly represent and disseminate community demands. Session – 8 HUMAN RIGHTS & STIGMA AND DISCRIMINATION Mr. RajKumar of Lawyers Collective presented to the members on Human Rights issues related to Treatment Access and how do stigma and discrimination affect treatment access. He began his session by giving an introduction to Human Rights. The participants were informed about the history of the concept of Human rights that had originated in the Post World War II era and gradually expanded in sphere and scope. He also shared with them guideline 5 of the International guidelines on HIV/AIDS and Human Rights that says “States should enact or strengthen anti discrimination and other protective laws that protect vulnerable groups, people living with HIV/AIDS and people with disabilities from discrimination in both the public and private sectors…” 16
  17. 17. The participants were also informed about the history of the beginning of the legal response to the pandemic. He stated that the human rights are achieved through Statutes, Case Law, Policy Directives and other executive action. Quoting the words of Justice Michael Kirby, High Court of Australia “Paradoxically enough, the only way in which we will deal effectively with the rapid spread of HIV/AIDS is by respecting and protecting the rights of those already exposed to it and those most at risk”, he stated the rights in the context of HIV/AIDS includes Marriage and Divorce, Maintenance, Right to residence, Inheritance, Matrimonial Property, and Access to treatment. Mr. RajKumar shared the story of Mr. Dominic D‘Souza of Goa, a football player who donated blood. Once donating blood, he found himself HIV infected and was immediately arrested and isolated. The only concern shown to him was a doctor visited him daily asking about his health. Then the participants were asked to list out the violations observed in his story. Many of the participants were of the same opinion that the reason for the arrest is not clear and he has not been properly medicated. He also stated the reason behind sharing the story that it was the first case taken by the Lawyers Collective Unit. Following this, two diametrically opposed legal responses to HIV/AIDS were presented. 1. ISOLATIONIST APPROACH: (No solution for the problem) - Mandatory testing - Confidentiality breached - Discrimination against PLHA 2. INTEGRATIONIST APPROACH - (Effective prevention) - Voluntary testing - Confidentiality maintained - Non discrimination towards PLHA He listed out the problems in the isolationist response as follows - Requires compulsory repeat testing of HIV negative persons - Economically not feasible - Impossible to implement for the whole of a country’s population He explained to the participants about Access to Treatment, Government’s ART roll out plan, Issues for consideration. Following to which, the participants were presented laws that promote Vulnerability, and about reproductive rights. He concluded his session by quoting NACO policy on reproductive rights which says HIV + women should have a complete choice in making decisions about pregnancy and childbirth, there should be no forced abortion or even sterilization 17
  18. 18. on the grounds of HIV status and proper counseling should be offered to enable pregnant women to make an appropriate decision either to continue with or terminate the pregnancy. Session – 9 MARGINALIZED GROUPS AND TREATMENT ACCESS (Panel Discussion) The panel discussion on Marginalized groups and treatment access included the following members – Mr. Ratan representing IDUs, Ms. Habiba representing Women, Mr. Shale representing MSM and Ms. Jeeva representing Transgender. Mr. David Barr chaired the panel discussion. He opened up the session highlighting the importance of having discussions on the Marginalized groups and Treatment access. He also stated that it would be more interesting if the community representatives share what is working for them and what is not. Mr. Ratan representing the IDU community listed out the issues faced by their community that included co-infection of HCV & HIV, no rehabilitation centres in the Government sector, lack of implementation of policy on drugs abuse treatment, oral substitution and displacement of IDUs. He also expressed his grievance that many of the members of MNP+ use drugs and the local community, family and other NGOs & networks working on HIV & drugs, stigmatizes them. He shared with the group an important issue of “Adherence – IDUs & ART” and insisted on the need for oral substitution therapy (OST) and stated that in spite of being in the national policy, it has not been implemented. Following this, he highlighted the issue of HCV – Hepatitis C co-infection and the lack of treatment for it, which is not even in the policy at all. After his presentation, Ms. Leena of MSF came up with a suggestion that there needs to be clear idea on the available drugs for the co-infection of HIV & Hepatitis C. For which, Mr. Ratan answered that no surveys had been taken so far to find out the exact number of IDUs receiving ART. He expressed his grievance about the lack of rehabilitation program for IDUs and informed that the efficacy of ART had been affected. He stated there had always been an unanswered question about the acceptance of the IDUs after going through the rehabilitation centres. He concluded his session by stating that no component currently focuses on the livelihood of the rehabilitate cases. Following him, Ms. Habiba Akter represented women as a marginalized group and stated that less attention had been paid to this community and also the 18
  19. 19. community had to face problem not only from the family but also from the society after the demise of the life partner. She insisted that lack of education and cultural norms were the biggest barriers to reaching and involving marginalized groups. She also came out with a few suggestions like developing the skills of these group members in Public Speaking, building a Supportive environment, experience sharing, access to information, assisting them to build a relationship with legal support organizations. All of these would facilitate leadership roles for those marginalized populations. Adding to her concerns, Mr. David requested that Regional Advisory Committee (RAC) members discuss gender balance, staffing in the program, and the process to address gender balance in this meeting. Mr. Shale presented the participants with the barriers faced by the MSM community. He identified socio-cultural norms as the foremost barrier for their group. He quoted an instance about the challenge faced by their society of an allegation made by “Frontline” against them stating that their society spreads homosexuality. Another barrier faced by their group was the motivation of the public by the religious factor. He stated that forming Self-help group could be a source to overcome this barrier. Also developing income generating activities and building linkage with legal support organizations could also help to overcome these barriers. He informed the participants that no survey has been conducted by the government to find out the exact figure of the number of MSMs on ART. He concluded his session by expressing his grievance that their group stays far behind for treatment access. As the last panel member, representing her Transgender group, Ms. Jeeva made a presentation on their organization and its activities. It presented the organization’s inception year and the various activities carried out by them supporting the group till date. The presentation clearly stated the strategies that had been followed in developing their membership included support group meeting, children motivational classes, educational support, nutritional and legal support. It also highlighted some real facts that were associated with the community that included being physically unique, social discrimination, commercial sex, begging etc. She concluded her session by presenting their future plans comprising of Training on Human Rights, Demand for welfare schemes, Training on alternative sources, Housing for the Target groups, Formulating action plan against discrimination in the society & media, Sensitizing the public on transgender issues, Formation of more number of self help groups, Legal support, and Rehabilitation for all Transgender. 19
  20. 20. Session – 10 MONITORING AND EVALUATION Dr. Sudhakar, MBBS, MHA took the session on Monitoring and Evaluation. The purpose of the session was to educate the participants on the subject, the difference between them, its benefits and how to develop effective indicators. The participants were informed about the proceedings of the session and also explained about the activity that would be a part of it. The session began with the definition of Monitoring – “Performance and analysis of routine measurement aimed at defining changes in environment or health status of population” or “ Continuous oversight of activities so that they are proceeding accessing to the plan. It keeps track of achievements, staff movements and utilization, supplies of equipments and money spent in relation to the resources available”. In short, it means the performance and analysis of the work undertaken. To explain it more specifically, he gave an instance of Comptroller & Auditor General (CAG) report of 2002–03 about the malfunctioning of condom vending machines bought in bulk in Punjab where NACO had directed the problem to Directorate of Health Services (DHS) to do the monitoring of the machines purchased and found that out of 385 condom vending machines purchased 230 machines were non functional. He also gave the definition of Evaluation – “Use of social research methods to systematically investigate programs effectiveness” that generally includes study design, Control/ comparison group, Measurement over time and specific studies”. In short, any program to be evaluated should contain the components of Outcome and Impact. He explained it with an example – To evaluate the condom vending machine project, the components that need to be identified were – the perfect usage of condom i.e. the outcome of the project and percentage of change in the behaviour, which would be the impact of the project. In crux, the comprehensive M & E framework should include Needs assessment, Monitoring comprising the aspects of Input – Process – Output, Evaluation comprising Outcome and Impact and Cost Effectiveness. Adding to which, they were instructed that the Cost effectiveness actually means the amount spent vs. the objective achieved or the result / output. The process of evaluation should always contain a goal, objectives that should be specific, measurable, attainable, and realistic with time frame (SMART). To attain the objectives, the activities / strategies need to be designed based on which indicator needs to be developed. Generally a good indicator should be operationalised, reliable, valid, specific and sensitive. Similarly the methods and tools should be developed for the implementation of the evaluation process. 20
  21. 21. ACTIVITY 1: The participants were asked to sit in groups (by country) and develop the indicators for their respective projects within half an hour. INDIA: Ms. Snehalatha representing INP+ presented the indicators developed of their project titled “Community mobilization and Capacity building of PLHA networks in India on Treatment Preparedness”. She presented the indicators at national and state level NATIONAL LEVEL ACTIVITY 1: National Advocacy meeting (OPERATIONAL) Indicators: • Availability of national action plan on Treatment education / advocacy – Operational indicators • Implementation of recommendations made at the national advocacy meeting in NACO treatment program ACTIVITY 2: National ToT Indicators: (SPECIFIC) • Availability of facilitator, modules on Treatment/ advocacy • No of PLHA trained as masters trainers ACTIVITY 3: Preparation of IEC materials on Treatment Education/ Advocacy Indicators: • No of IEC treatment education materials produced and distributed by type & language STATE LEVEL: ACTIVITY 1: Rapid Situation Assessment Indicators:  Availability of situation and response analysis reports on Treatment education/ advocacy by state level PLHA networks. ACTIVITY 2: Treatment education Program Indicators:  No of PLHA trained on Treatment education – by gender, marginalized group representation. ACTIVITY 3: Treatment Advocacy Program Indicators:  No of PLHA trained on Treatment advocacy – by gender, marginalized group representation.  No of sessions conducted 21
  22. 22. ACTIVITY 4: Advocacy Activities Indicators:  No of people reached through the advocacy activities by the type of stakeholders. BANGLADESH: Mr. Shahid-Al-Mamun presented the indicators developed for their project titled “Promoting MSM/ MSW to voluntary testing and counseling. ACTIVITY 1: Provide Training for Peer Educators to educate & empower the community for VCT Indicators: • No of Peer Educators received training • No. of training organized ACTIVITY 2: Provide training for counselors in HIV & Psychosexual Pre and posttest counseling - Basic and Follow-up Indicators: • No of counselor received training • No of clients received counseling service ACTIVITY 3: Ensure facilities are available for sympathetic & confidential testing Indicators: • Clinic service currently ongoing with appropriate equipment • No of clients refer for testing and counseling ACTIVITY 4: Develop IEC materials for use by Peer Educators and Counselors Indicators: • No of IEC materials developed ACTIVITY 5: Organizing social group meeting Indicators: • No of social group meeting held • No of participants attended the session PAKISTAN: Mr. Pervaiz Masih of Cathe Foundation presented the indicator developed for their project on “Magazine as a tool for Advocacy for PLWHA in Pakistan” He presented the members with the interventions of the project that includes Publishing 12 magazines containing enough material (total 2000 copies) on HIV & AIDS in one year, 12 monthly meetings of Editorial board and steering committee to collect and finalize material on HIV & AIDS to be published, involve media and influential people for advocacy of PLWHA rights, mid-term and final assessment with the following indicators. 22
  23. 23. Indicators:  Number of AIDS CARE magazines published in one year  Number of AIDS CARE copies published and distributed to people targeted  Regular meetings of editorial board/steering committee, collecting, selecting and finalizing material to be published in the first week of every month  Established networking with other medias (sharing information and publishing material on HIV & AIDS)  Boosted up advocacy issues through publication of special articles, features and Interviews of PLWHA  Mid-term and final assessment of AIDS CARE done after six months and at the completion of the project cycle  Feedback from readers to improve quality of material and publication NEPAL: Mr. Anjan Amatya representing NAP+N presented the indicators developed for the project titled “Treatment Education for People living with HIV in Nepal” ACTIVITY 1: No of PLHA project staff hired Indicators:  Project Coordinator – 1  Project Officer – 1 ACTIVITY 2: No of treatment literacy materials developed Indicators:  4 treatment literacy posters developed  6 treatment literacy fact sheets developed  6 treatment literacy brochures developed ACTIVITY 3: No of PLHA resource persons/trainers hired Indicators:  2 persons ACTIVITY 4: No of local PLHA resource persons hired Indicators:  16 persons ACTIVITY 5: No of treatment training workshop conducted for PLHA Indicators:  8 workshops in 8 districts for 2 days 23
  24. 24. ACTIVITY 6: No of PLHA who receive treatment literacy training Indicators:  240 persons reached through 8 workshops for 30 persons each ACTIVITY 7: No of treatment training workshop conducted for CBO/ NGO Indicators:  8 workshops in 8 districts for 2 days ACTIVITY 8: No of CBO/NGOs workers who receive treatment literacy training Indicators:  200 persons reached through 8 workshops for 25 persons each Session 11 REVIEW AND EVALUATION OF THE WORKSHOP The participants were asked to fill out the evaluation forms provided during the workshop. There were forms to assess every day’s activities and also there was a form on over all evaluation of the workshop that included the components of logistical arrangements made, venue, accommodation arrangements made. The overall evaluation of the workshop given by the participants is included as appendix 3 in this report at the end. 24
  25. 25. Appendix 1: LIST OF PARTICIPANTS PARTICIPANT NAME ORGANIZATION COUNTRY 1. Md. Shahid Al Mamun BSWS Bangladesh 2. Md. Touhidal Islam AAS “ 3. A. K. M. Anisuzzaman Mukto Akash “ 4. Mr. Shale Ahmed BSWS “ 5. Mr. Nicholas Purification CCDB “ 6. Ms. Habiba Akter AAS “ 7. Dr. L. Sai Krishna LEPRA India 8. Mr. P V Ramesh NIPASHA+ “ 9. Mr. Amarjit Langam GIPA Alliance “ 10. Mr. Mike Tonsing DNP+ “ 11. Ms. Snehalatha INP+ “ 12. Mr. G. S. Shreenivas Kripa Foundation “ 13. Mr. Soumitra Poddar SPARSHA “ 14. Ms. Jeeva SIP+ “ 15. Ms. Noorie Durai SIP+ “ 16. Mr. Elango Ramachandar INP+ “ 17. Mr. Vijay Nair NIPASHA “ 18. Mr. Ratan Singh MNP+ “ 19. Dr. Tokugha Yepthomi YRG CARE “ 20. Mr. Ujjwal Baral Nava Kiran+ Nepal 21. Mr. Suben Dhakal BDS “ 22. Mr. Basanta Chettri NAP+N “ 23. Mr. Anjan Amatya NAP+N “ 24. Mr. Rajiv Kafle Nava Kiran+ “ 25. Mr. Sunil Babu Pant BDS “ 25
  26. 26. 26. Mr. Pervaiz Masih Cathe Foundation Pakistan 27. Mr. Ahmed Habib PLUS DF “ 28. Mr. Qaisar Ismail NCCR/CRY Pakistan 29. Mr. James Rehmat Pak Plus “ 30. Dr. A Momin Kazi BRIDGE “ 31. Mr. Asher Qurban Bhatti NLACS “ 32. Mr. Nazir Masih NLACS “ 33. Ms. Shukria Gul Pak Plus “ OTHERS 1. Mr. David Barr, Global Manager, the Collaborative Fund 2. Mr. Sam Avrett, Observer 3. Mr. Andy Quan, Project Manager, Asia 4. Mr. Loon Gangte, Regional Coordinator FACILITATORS 1. Ms. Leena 2. Mr. Raj Kumar 3. Dr. Sudhakar VOLUNTEERS 1. Mr. Alagarsamy INP+ 2. Ms. Sudha Prabhu INP+ 3. Ms. Anjana Lakshmi P INP+ 26
  27. 27. Appendix 2: WORKSHOP AGENDA DAY 1 - 26th April 2006 Time Sessions Presenter/ Facilitator 8:45 - 9.15 Opening: Loon • Welcome and Introductions • Background and goals of workshop • Review of agenda • Logistics and housekeeping 9:15 – 9:45 Expectations Andy Quan Small group exercise: what do you want Project Manager, Asia. to accomplish at this workshop? 9.45 - 10.15 Introduction to Collaborative Fund and David Barr, TIDES Global Manager, Collaborative Fund for HIV Treatment Preparedness. 10:15–10:30 Tea Break 10.30 –12.00 Country Reports on Access to One panelist from each Treatment; Country (15 minutes each with 5 minutes of issues such as: questions) -How many PLWHA in your country? -How many people are estimated to be in Chair: Greg Manning need of ARV? -How many have access to ARV Panelist treatment (estimated)? Nepal- Rajiv -Are ARV available? How are they India-Ratan distributed? What drugs are available or Pakistan-Nazir unavailable? Bangladesh-Shale 12:00 – 13:00 Project Presentation from Grantees Chair: Andy (Quick snapshot of the project- 10 mins India- Lepra & Kripa each highlighting key activities and Nepal- NAP+N lessons learnt). Pakistan-NCCR/CRY Bangladesh- AAS. 13:00 – 14.00 Lunch 14:00–14:15 Icebreaker 14:15-15:00 Small Group Discussion – RAC members can What lessons did you learn from the facilitate small groups. 27
  28. 28. project presentations? What actions are Report-back. you inspired to do? (note: the previous session took up all of the time and no small group discussions were held) 15:00–16:00 ARV, OI & Co-Infection Update Dr. Toku, TRP India. Discussion of: -ARV side effects and side effect management -Adherence/Resistance -Best 1st & 2nd line combinations -HIV-TB co-infection / HIV – Hep C co- infection 16.00-16.15 Tea Break 16.15– 17.15 Treatment Literacy – Panel Discussion Chair: Rajiv • Each panel member will present on India- from Indian the following questions: grantees • What is treatment literacy? Nepal- Anjan from NAPN • Why is it important? Pakistan-Dr. Bajwa from • What treatment literacy materials are ASEER needed? Bangladesh- Mukti from • What makes good treatment literacy Mukto Akash materials? • What is needed in each country? • How will it be produced? • How will it be distributed? 17:15-17:30 Wrap up / Conclusions / Announcements Dinner DAY 2 - 27th April 2006 Time Sessions Presenter/Facilitator 9.00-9.15 Recap of Day 1. One of the participants, preferably a grantee. 9.15-10.15 Developing Strategic Treatment Leena, MSF , Advocacy Plan Project Manager (India) • What is advocacy? • What tools can be used for advocacy? • How do we identify issues? • How do we identify allies? 28
  29. 29. 10.15-10.30 Tea/ Coffee Break 10.30-13.00 Small group sessions: Leena, MSF • Designing a treatments advocacy Project Manager (India) plan • Report back 13.00-14.30 Lunch 14.30-14.45 Energizer 14.45-16.00 Human Rights & Stigma and RajKumar Discrimination Lawyer’s Collective -What Human Rights issues relate to Treatments Access? -How do stigma and discrimination affect treatments access? 16:00 -16:15 Tea/Coffee Break 16.15-17.15 Marginalized Groups and Treatments Chair: TBA Access – Panel discussion Women (Kousalya) What does it mean to be marginalized? IDU (Ratan) What are the barriers to reaching and MSM (Shale) involving marginalized groups? Transgender - Noorie What interventions are required to strengthen their involvement? How can we facilitate leadership roles for those from marginalized populations? 17.15-17.30 Wrap up / Conclusions / Announcements Reception / Party / Drinks / Food/ Music………. DAY 3 - 28th April 2006 Time Sessions Presenter/Moderator /Facilitator 9.00-9.15 Report back from day 2 9.15-10.15 M&E Dr. Sudhkar, MBBS,MHA -What is Monitoring and Evaluation? -What is the difference between them? -How do you develop indicators? -Why is it useful? 29
  30. 30. 10.15-10:30 Tea/Coffee Break 10.30-12.00 Exercise: Dr. Sudhakar, MBBS,MHA Write 5 indicators for measuring the success of your current project? Group discussion 12.00-13.00 Country Meetings – Each grantee Small groups – India and should be ready to do a short (5 minute) Pakistan presentation on their project to the other Bangladesh and Nepal grantees from their country. (note: this could join either groups. discussion did not take place) 13:00 – 14:00 Lunch 14:00 – 14:15 Energizer 14.15 - 16.00 Action Plan (Individual) Put action plans on wall. If • Develop a follow-up action plan there is time, one for after the workshop? organization from each • What lessons will you bring to country can present. your organization? • What actions will you do to increase treatments access? • What are your plans for after your project finishes, with or without funding? 16.00-16.15 Tea/Coffee Break 16.15-16:45 Feedback of workshop - oral (Suggestion: a small group discussion on the best thing about the workshop, and something that could be improved 16:45 – 17:15 Evaluation of workshop – individual forms – written 17.15-17.30 Final Questions / Closing of Workshop / Thanks / Good-bye!!! Appendix 3: SUMMARY OF PARTICIPANTS EVALUATION A summary of the evaluation of the workshop done by participants will be distributed at a later date, and included in the final report as appendix 3. 30
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